Valarie Franklin
Pharmacist, Swiftie, Brittle Bone Disease (osteogenesis imperfecta), Vision Loss
Last month, I shared an interview with Chloe, a scientist, educator, hypermobile queen, and at times, a medical mystery. This month, I’m sharing my conversation with her incredible wife, Valarie.
Their shared humor and way of moving through the world are what make them such a powerful pair. Being around them, you can’t help but feel energized by their presence, understood through their empathy, and inspired by their tenacity.
Valarie is someone who brings joy with her. She is a pharmacist, devoted dog mom, crafter, and Taylor Swift lover, who is quick to laugh and very thoughtful.
When we sat down for this interview, Valarie was in the middle of an incredibly difficult year. She had recently lost her mother and experienced significant changes in her vision, which led her to stop driving.
This interview shows a moment in time where grief and joy exist side by side, a complexity understood by many.
Would You Mind Sharing About Your Disability?
Valarie: My primary disability is osteogenesis imperfecta (OI), or brittle bone disease. I’m three feet tall and I’ve got metal rods in both my femurs and my right tibia that they put in when I was a kid. That really strengthened my bones, and they were telescoping rods, so they grew with me, but not that much.
Laura: I didn’t know that they could do that.
Valarie: You know, there have been all kinds of problems, some people really don’t like the telescoping rods, so those kids have to get the rods replaced as they grow.
So, that’s my primary disability, but it also affects my teeth and I have a condition called keratoconus in my eyes. It is pretty much when your cornea isn’t round, it’s football shaped. My right eye was my bad eye and in 2014 I had a corneal transplant. It was successful. It was kind of a gamble, because no one had ever really done a corneal transplant on someone with OI that we could find, but the surgery was a success, but I developed glaucoma after the surgery. I was on drops, and it was under control and then all of a sudden, it wasn’t.
The problem with going blind in one eye is that I didn’t realize it was happening, because my left eye was compensating so much. So, I lost most of the vision in my right eye. Then in like 2021 or 2022, that eye had another problem, and the corneal transplant failed. They tried to do a second one, and that failed also. That’s why the eye is now pretty much totally blind and my vision is getting worse in my left eye. I used to drive up until a year ago.
Laura: Is glaucoma common after a corneal transplant?
Valarie: It happens sometimes if your eye is sensitive, or if you’re having a lot of inflammation, they’ll put you on prednisone drops. That can increase the pressure in the eye. But I was not on steroids at that point, it was just a secondary complication.
Chloe (Valarie’s wife): There are other treatment options for other people, but not for her because her tissue is so fragile from OI.
Laura: OI makes your tissue fragile too?
Valarie: Yeah, especially the eye tissue. One of the hallmark characteristics of kids with OI is that the sclera, the whites of the eye, they’re not white, they’re more translucent. That’s because collagen makes your eyes white.
Chloe (Valarie’s wife): Her mom would swear that if the whites of her eyes looked blue she was more likely to break, so she was always keeping close watch on your eyes.
Valarie: There’s no science to back that. I also have ADHD, which I’m officially diagnosed with. I suspect I have a non-verbal learning disability, but we’ve only come to suspect that in the last several months.
Laura: Can you elaborate, what is a non-verbal disability?
Valarie: It’s a disability that doesn’t affect speech. For me, it’s mostly spatial. So, like, my dad would always say I didn’t have common sense. You know, I could never figure out how to do things and never knew how to get places and stuff like that. I’m also face blind and there’s varying degrees of it, but basically, I have a hard time remembering people’s faces. So, if we ran into each other somewhere, I might not recognize you.
Chloe: She’s very funny because she’s very recognizable, but she doesn’t recognize anyone.
On Vision Loss
Laura: How do you feel about not driving?
Valarie: It’s hard. About a year and a half ago, I had pretty good peripheral vision in this eye. I couldn’t see things head on very well, as far as acuity, but I could see okay. I lost that remaining vision at the same time we moved to Oakland County. So, losing the vision and being in a more challenging driving environment, was really overwhelming. I pretty much only drove on the highway to go back home to Davison, because we were emptying my parents house out.
After that, I lost my passport and I didn’t want to get a new passport, because I’m like, the instant I admit that I lost that thing, I’m gonna find it. So, I decided I was gonna get an enhanced license, just because we live so close to Canada, and I was hoping I would be able to get Taylor Swift tickets. I did not want the reason I couldn’t go see Taylor Swift to be that I couldn’t get into Canada. So, I decided to get an enhanced license. I remember doing the vision test. They were like, okay, read us the first 10 letters. And I look in it, and I can only see one. Then Chloe looked in it. I thought maybe it wasn’t functioning, but it was. They were super nice and were like you can see an optometrist and maybe… and I was like, no, if I can’t read this, I shouldn’t be driving. So, I voluntarily signed over my right to drive. So, I can go to Canada, I just can’t drive myself there. There was a lot of grief surrounding that. Plus, my mom had just died so it was really a lot.
Then, I became very hyper-focused on selling my adaptive car. Because Chloe wasn’t gonna be able to drive it and I didn’t want it sitting around. I accidentally found someone just by posting on my Instagram. I was writing about how I was sad that I couldn’t drive anymore, and someone that I follow reached out to me. She was like, I need a car. She and her husband flew in from Maryland to get it and drove it back.
Laura: Are those adaptive vehicles hard to get?
Valarie: They are insanely expensive. You’ll see advertisements for a used Toyota Sienna with a ramp, five years old, with 75,000 miles on it, and it’s $30,000. My adaptive vehicle was in good shape. My dad worked for GM. He didn’t know a lot about cars, but he always instilled in me that preventative care was really important, even for your car. So, every six months, I got it checked out. He’s like you can’t afford to have it break down on you, so I had taken really good care of it.
Laura: Do you feel bad having to ask Chloe to drive you places all the time?
Valarie: Yeah, losing that independence is hard. Sometimes it’s just the hypothetical that I can’t go just anywhere I want, but at least we live in Metro Detroit where I could get an Uber someplace if I needed to. But when Chloe had surgery, we had to have my friend come stay with us, because we didn’t have anyone to drive us to the hospital. She’s having another surgery in December, and we’re trying to figure out, like, how we’re gonna get there and get back because I can’t drive. So it’s been challenging in that respect.
What do you like to do for fun?
Valarie: I like smoking pot. I like being outside and gardening. My dad was a gardener, so it kind of makes me feel close to him. I like mindlessly taking care of plants that are outside. I have some house plants that I have to be careful not to love to death. I listen to a lot of audiobooks. I really like the TV show, Supernatural. It was on the CW, and so my friends and I go to conventions sometimes. I also like crafting. I don’t craft anything useful. When I hoped I was gonna get Eras Tour tickets, I got a lot of beads and ended up making bracelets and stuff. This sounds so stupid, I’m a 38 year old woman, but there’s these blind balls that you can buy, they’re like toys that you make tiny foods out of. It uses UV resin. They’re called Miniverse. I have a bunch of friends who are all obsessed with that. So, I like making tiny food, they’re usually about Barbie scale. I’ve made a pretty tight group of friends that I met on Facebook. None of us live near each other at all. But we met because we’re in this group called, I’m High and These are My Minis. There’s like 10 of us, and the group and chat name is Mini High.
I like playing my Nintendo Switch. I just started playing Animal Crossing. I’m not a big video games person, but after my mom died, I was having a very hard time and doom scrolling on TikTok and stuff like that. One of my friends recommended that I get a Switch and I love playing Animal Crossing. It’s very therapeutic.
Motivation & Change for the Future
Laura: What motivates or inspires you?
Valarie: Oh, goodness. I mean, Chloe had such a good answer for this. I’m sure at one point I had a good answer for that. This has been a really hard year. So, right now, I feel like not much has motivated me. I’m putting one foot in front of the other and just trying to wake up in the morning and do my job. But Chloe really does motivate me. She drags me along in her shenanigans. So, yeah, I don’t have a great answer for that.
Laura: A supportive partner is a great answer.
Chloe: You show up for the dogs.
Valarie: They make it very hard to not to.
Laura: You’re very accomplished too. So, we know you are a motivated and inspired person.
What change would you like to see for disabled people in the future?
Valarie: I like recognition and visibility. I feel like, in a lot of things, we’re not thought of. Even people that you become close with, it can take them a long time to remember that part of you. They have to think of things from that perspective. For example, if we’re getting an Airbnb, considering this aspect would be difficult for Valarie to deal with, or whatever. I mean, I’d like to see more rights for everyone. I guess right now, I just want to keep what I have. I’m so nervous about what the next years of this administration will bring. So, visibility is a big thing. As a really short person too, visibility is literally a problem sometimes.